Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Tuesday, March 5, 2013

St. George Appointment

We had our appointment for Hailey's follow up with her Rehab Dr. in St. George February 25th. Our appointment was at 6:00pm. (odd huh?) We left our house around noon and was able to check in at 3:00pm. I am so glad St. George is so close and an easy drive. We finally racked up enough points for a free nights stay at the hotel. (It's about time!)

So we check in, get settled and hook Hailey up for her feed. After that was all done we drive down to the hospital for our appointment. This time there was only 1 family in front of us but we didn't get into the room until 15 minutes after our appointment time. Once we get in the nurse weighs Hailey (60.9 POUNDS!) and catches up on medications and paperwork. Hailey is on my lap and out of her wheelchair and the Dr. comes in. She first notices that Hailey is sitting semi up right and is in a happy mood. She asks about Hailey's AFOs and how long she can tolerate them. She is in them from when she wakes up until she goes to bed. A funny thing about that is that as soon as the clock strikes 8pm she starts getting fussy and pointing at her boots to have them be taken off. The doctor asks about the drooling, and the sleeping, and then she wants to examine Hailey. That's when Hailey starts crying. The doctor takes off Hailey's AFOs and checks the clonus of Hailey's Muscles. Just a recap on what Clonus is:

The Doctor sees and improvement in it and decides to hold back on Botox this time. The nurse asks about therapy and I tell her that my insurance still doesn't want to provide it so we are on our own besides the 30 minutes a week at school. I tell her that I can get Hailey to stretch her hands up to her head and that we work on baring weight on her legs. She asks to see and tells us that she didn't expect to see Hailey do that. I don't know if she meant at all or at this appointment. When I put Hailey's feet on the floor and slowly get her to stand she starts shaking and can't get a hold of the spastic muscle tone right away, but after a few seconds the spasms stop and I am holding her up under her arms and she is baring some weight while I have the majority.

Hailey just doesn't have the strength in her core to stand straight up for more then a few seconds. After I help push a couple of steps out Hailey her knees start to buckle and Josh has to take her and put her back on the table. She asks us to put Hailey on her stomach (which is not a favorite position for her) and notices that Hailey's hips don't lay flat...still

We talk about the Baclofen and maybe trying to reduce the dose. If we can get her on a lower dose of the muscle relaxer maybe it'll help strengthen her core. By this time Hailey is screaming and crying so hard that she blows out her diaper and we have to change her and clean up the examination table. One concern I have with Hailey is that she goes above and beyond what is necessary with the crying. She doesn't let me out of her sight. I can't get up and walk away to use the restroom or grab the phone, or feed the dogs. She FREAKS! When and if I ever get a regular nurse and get respite hours I don't want her to be screaming the whole entire time. She's great at school because she's going away from me, but if I go away from her it's like an explosion of emotion with her. The doctor says she displays anxiety issues and could maybe use an anti-depressant. That seems odd to me. My 4 year old needs an anti-depressant? I am weary of adding another medication to the mix at this point. I take the prescription but I want to read up on it and see what her pediatrician says about it. If it'll make her happy and in a good mood awesome, but it's still odd to me. We also get new stretch AFOs that we need to start working on. Hailey isn't a fan.

She also says that she talked to Hailey's neurologist and he needs us to come back to the hospital tomorrow and have some blood drawn for labs. When Hailey gets blood drawn it always seems to lead to more questions and not enough answers. Then the waiting! Then what's worse then waiting is the call with so called "results."

So we are done here and have to come back again in May to check on the Clonus and see if we need botox or not. Tomorrow we come for blood work then we can head home.

I didn't take any pictures of anything in particular in St. George but here are some I had on my phone:

It's not often you see a picture of Hailey standing upright. She likes to "walk" but it's hard on everyone. Her legs get shaking after a few "steps" and my back is perma-huntched from holding her under her armpits. It's harder for Josh being even taller then me. We try and get her on her feet a few times a day despite all that. Her wheelchair is on the left of the picture and her rifton stander is behind her against the wall. My house looks like a hospital warehouse.

Every time we go away and come back someone is missed very much by the dog. This was actually when we got home from Disneyland, but she does this every time I put Hailey on the floor.

This was funny. Josh had set off the fire alarm in the house and it was so loud! I told Hailey that we better cover our ears. So this is what she did. It didn't last long and she was trying so hard to hold on to the pose that she squished her face. It was very cute!